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51. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Guha, Abhjit, Solarin, Adaobi, Sinha, Aditi, Platona, Adriana, Hamilton, Alexander, Woods-Barnard, Alice, Neu, Alicia, Tong, Allison, Dart, Allison, Eddy, Allison, Karathanas, Alyssa, Baumgart, Amanda, Fielding, Amelia, LePage, Amelia, Bernier-Jean, Amelie, Kelly, Amy, Teixeira, Ana, Viecelli, Andrea, Matus, Andrea, Narva, Andrew, Ju, Angela, Wang, Angela Yee-Moon, Sharma, Ankit, Fielding, Anna, Francis, Anna, Meza, Anthony, Fielding, Aria, Teixeira-Pinto, Armando, Bagga, Arvind, Jankauskienė, Augustina, Kelly, Ayano, Gillespie, Barbara, Sautenet, Benedicte, Vogt, Beth, Foster, Bethany, Warady, Bradley, Dixon, Bradley, Manns, Braden, Hemmelgarn, Brenda, Bscardark, Brittney, Romeo, Brooklyn, Hanson, Camilla, Meza, Carlos, Brockett, Carter, Guha, Chandana, Prestidge, Chanel, Logeman, Charlotte, Green, Charmaine, Sanchez-Kazi, Cheryl, Perkins, Christy, Schmitt, Claus Peter, Fielding, Craig, Settee, Craig, Sumpton, Daniel, Meza, Daniel, Karathanas, Darien, Harris, David, Wheeler, David, Hooper, David, Gipson, Debbie, Geary, Denis, Bockenhauer, Detlef, Haffner, Dieter, Mekahli, Djalila, Drozdz, Dorota, Romeo, Ed, Ku, Elaine, Urbina, Elaine, Levtchenko, Elena, Balovlenkov, Elena, Hodson, Elisabeth, Morales, Emily, O'Lone, Emma, Machuca, Emma, Carlton, Emmah, Au, Eric, Olver, Erin, Morales, Estefania, Mirza, Fatima, Mackie, Fiona, Tentori, Francesca, Schaefer, Franz, Higgins, Gail, Deschenes, Georges, Plunkett, Georgia, Yoder, Gerilyn, Wong, Germaine, Morales, Giselle, Germino, Greg, Desmond, Hailey, Perkins, Hayley, Mitchell-Smith, Harrison, Coolican, Helen, Xu, Hong, Yap, Hui-Kim, Anochie, Ifeoma, Ha, Il-Soo, Davis, Ira, Liu, Isaac, Samaniego, Israel, Groothoff, Jaap, Machuca, Jaime, Machuca, James, Kerklaan, Jasmijn, Brockett, Jeff, Norton, Jenna, Shen, Jenny, Goebel, Jens, Rao, Jia, Machuca, Jimmy, Mitchell-Smith, Jo, Watson, Jo, Gill, John, Craig, Jonathan, Flynn, Joseph T., Kausman, Joshua, Samuels, Joshua, Bacchetta, Justine, Yoder, Kaleb, Manera, Karine, Azukaitis, Karolis, Twombley, Katherine, McMichael, Kelly-Ann, Ishikura, Kenji, Romeo, Kennedy, Settee, Kevin, Van, Kim Linh, McMichael, Lachlan, Trinh, Lany, Greenbaum, Larry, Sanchez, Laura, Fielding, Leo, Rees, Lesley, Lippincott, Leslie, Mejia-Saldivar, Levi, Saldivar, Lidia, Guay-Woodford, Lisa, Samaniego, Lizett, Hamiwka, Lorraine, Bell, Lorraine, Dunn, Louese, Barry, Lucinda, Macauley, Luke, Holmes, Luke, Karathanas, Madelynn, Mitchell-Smith, Madison, Walker, Mandy, Benavides, Manuel, Tonelli, Marcello, Ferris, Maria, Vivarelli, Marina, Wolfenden, Mark, Howell, Martin, Christian, Martin, Schreiber, Martin, Moxey-Mims, Marva, Leonard, Mary, Karathanas, Matthew, Pearl, Meghan, Natatmadja, Melissa, Brockett, Melissa, Bonilla-Felix, Melvin, Atkinson, Meredith, Zappitelli, Michael, Baum, Michel, Rheault, Michelle, McCulloch, Mignon, Matsuda-Abedini, Mina, Michael, Mini, Khan, Mohammad, Salih, Mohammad, Carlton, Mycah Ann, Benador, Nadine, Plunkett, Ngairre, Webb, Nick, Scholes-Robertson, Nicki, Larkins, Nicolas, Evangelidis, Nicole, Yoder, Nigel, Meza, Norma, Olver, Paige, Carlton, Paiyton, Brophy, Patrick, Tugwell, Peter, Cochat, Pierre, Mehrotra, Rajnish, Wolfenden, Raphael, Gbadegesin, Rasheed, Benavides, Raymond, Johnson, Rebecca, Morales, Ricardo, Jr., McGee, Richard, Fish, Richard, Gardos, Robert, Pecoits-Filho, Roberto, Vargas, Rocio, Saldivar, Rodolfo, Coppo, Rosanna, Shroff, Rukshana, Raina, Rupesh, Youssouf, Sajeda, Crowe, Sally, Anumudu, Samaya, Chan, Samuel, Baldacchino, Sarah, Wenderfer, Scott, Wolfenden, Sebastian, Carlton, Selah, Sutton, Shanna, Murphy, Shannon, Teo, Sharon, Salih, Sheyma, Sahney, Shobha, Carlton, Silas, Carter, Simon, Pearson, Simone, Khan, Simra, Wilson, Skyla, Sharma, Sonia, Alexander, Stephen, Marks, Stephen, Cornish, Stephen, Goldstein, Stuart, Samuel, Susan, Furth, Susan, Mendley, Susan, Lippincott, Susan, Charles, Symone, Gutman, Talia, Mitchell-Smith, Terri, Harris, Tess, Vetter, Thorsten, Carlton, Tiffany, Carlton, Timothy, Querfeld, Uwe, Saglimbene, Valeria, Charles, Virginia, van Biesen, Wim, Winkelmayer, Wolfgang, Machuca, Yenissey, Cho, Yeoungjee, Salih, Yusuf, Anh, Yo Han, Perkins, Zachary, Salih, Zeynab, Hanson, Camilla S., Craig, Jonathan C., Eddy, Allison A., Gipson, Debbie S., Webb, Nicholas J.A., Alexander, Stephen I., Furth, Susan L., Viecelli, Andrea K., Au, Eric H., Shen, Jenny I., Manera, Karine E., Carter, Simon A., and Walker, Amanda

Published
2020
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52. Establishing a Core Outcome Measure for Peritoneal Dialysis-related Peritonitis: A Standardized Outcomes in Nephrology—Peritoneal Dialysis Consensus Workshop Report

Author

SONG Executive Committee, Craig, Jonathan, Tong, Allison, Wang, Angela, Hemmelgarn, Brenda, Manns, Braden, Wheeler, David, Gill, John, Tugwell, Peter, Pecoits-Filho, Roberto, Crowe, Sally, Harris, Tess, Van Biesen, Wim, Winkelmayer, Wolfgang, SONG-PD Steering Group, Johnson, David W., Brown, Edwina, Brunier, Gillian, Perl, Jeffrey, Dong, Jie, Manera, Karine, Wilkie, Martin, Mehrotra, Rajnish, Dunning, Sue-Ann, Dunning, Tony, Cho, Yeoungjee, SONG-PD Infection Expert Working Group, Perl, Jeff, Piraino, Beth, Szeto, C.C., Forfang, Derek, Brown, Fiona, Ngaruiya, Grace, Htay, Htay, Teitelbaum, Isaac, Scholes-Robertson, Nicole, Gomez, Rafael, Nessim, Sharon, Kanjanabuch, Talerngsak, Ito, Yasuhiko, Shen, Jenny, Al Sahlawi, Muthana, SONG Coordinating Committee, Martin, Adam, Baumgart, Amanda, Bernier-Jean, Amelie, Matus Gonzalez, Andrea, Viecelli, Andrea, Ju, Angela, Teixera-Pinto, Armando, Sautenet, Benedicte, Hanson, Camilla, Guha, Chandana, Sumpton, Daniel, Hannan, Elyssa, O’Lone, Emma, Au, Eric, Kerklaan, Jasmijn, Dunn, Louese, Howell, Martin, Nataatmadja, Melissa, Evangelidis, Nicole, Amir, Noa, Natale, Patrizia, Cazzolli, Rosanna, Anumudu, Samaya, Carter, Simon, Gutman, Talia, Rahim Vastani, Thomas Vastani, Participants and contributors – Health professionals, Abu-Alfa, Ali, Matus-Gonzalez, Andrea, Aufricht, Christoph, Wallace, Eric, Dasgupta, Indranil, Knight, John, Foo, Marjorie, Lambie, Mark, Schreiber, Martin, Pisoni, Ronald, Apata, Ronke, Antwi, Sampson, Novosad, Shannon, Davies, Simon, Booth, Stephanie, Participants and contributors - Patients/family members/caregivers, Lau, Agnes, Chi, Allen, Heckendorn, Barbara, Allen, Brandie, Dewey, Brenda, Horton, Danielle, Edwards, Dawn, Robinson, Evelyn, Franco, Freddy, Braddock, Gary, Grossman, George, Chestney, Juliana, Laws, Karmen, Clark, Karrin, Penningtown, Keith, Richardson, Lisa, Verdin, Nancy, Jefferson, Nichole, Scholes-Robertson, Nicki, Gedney, Nieltje, Chestney, Norman, Griffiths, Pamela, Kidwell, Sharon, Downs, Shelley, Ball, Terence, Yaeger, Thomas, Elly, Virna, Senior, Wiliam, Shen, Jenny I., Manera, Karine E., Acevedo, Rafael G., Nessim, Sharon J., Szeto, Cheuk-Chun, Craig, Jonathan C., Gonzalez, Andrea M., and Viecelli, Andrea K.

Published
2022
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58. PD39-03 POST-VOIDED RESIDUAL URINE RATIO IS A PREDICTOR OF BLADDER OUTLET OBSTRUCTION IN MEN WITH LOWER URINARY TRACT SYMPTOMS: DEVELOPMENT OF A CLINICAL NOMOGRAM

Author

De Nunzio, Cosimo, primary, Lombardo, Riccardo, additional, Nacchia, Antonio, additional, Cicione, Antonio, additional, Turchi, Beatrice, additional, Gallo, Giacomo, additional, Gravina, Carmen, additional, Guercio, Alessandro, additional, Stira, Jordi, additional, Rivesti, Lorenzo Maria, additional, Franco, Antonio, additional, Guarnotta, Giorgio, additional, Mancini, Elisa, additional, Voglino, Olivia Alessandra, additional, Baldassarri, Valeria, additional, D'Annunzio, Simone, additional, Riolo, Sara, additional, Carter, Simon, additional, Vicentini, Carlo, additional, and Tubaro, Andrea, additional

Published
2022
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59. PD38-03 ROLE OF POST-VOIDED RESIDUAL RATIO IN PATIENTS WITH DETRUSOR UNDERACTIVITY: A PRESSURE-FLOW STUDY ANALYSIS

Author

De Nunzio, Cosimo, primary, Lombardo, Riccardo, additional, Nacchia, Antonio, additional, Cicione, Antonio Maria, additional, Carter, Simon, additional, Vicentini, Carlo, additional, Turchi, Beatrice, additional, Gravina, Carmen, additional, Stira, Jordi, additional, Guercio, Alessandro, additional, Gallo, Giacomo, additional, Baldassarri, Valeria, additional, Voglino, Olivia Alessandra, additional, Franco, Antonio, additional, Rivesti, Lorenzo Maria, additional, Riolo, Sara, additional, D'Annunzio, Simone, additional, Mancini, Elisa, additional, Guarnotta, Giorgio, additional, and Tubaro, Andrea, additional

Published
2022
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61. Standardised Outcomes in Nephrology – Glomerular Disease (SONG-GD): developing a core outcome set for trials in glomerular disease

Author

Carter, Simon

Subjects
randomized controlled trials, glomerular disease, core outcome set, epidemiology and outcomes, glomerulonephritis
Abstract

Glomerular diseases are a major cause of kidney failure worldwide and are responsible for a large burden on patients and health systems. Patients may experience fatigue, reduced mobility, cognitive dysfunction, infertility, bone disease, cancer and impaired psychosocial wellbeing. Trials are the primary means of assessing interventions that may improve health outcomes, however outcomes reported in trials may lack relevance during treatment decision-making or be inconsistently reported which limits the effective comparison of treatments. The aim of the Standardised Outcomes in Nephrology – Glomerular Disease initiative (SONG-GD) was to establish a core outcome set for trials in adults with glomerular disease. The methods included this thesis are: a systematic review to analyse the scope and heterogeneity of reported outcomes for glomerular disease activity; focus groups with nominal group technique to identify and rank patient-important outcomes; an international two-round Delphi survey to develop consensus among diverse stakeholder groups; and two stakeholder workshops to discuss and endorse the proposed core outcomes. SONG-GD established the core outcomes of kidney function, disease activity, death, life participation and cardiovascular disease to be reported in all trials in adults with glomerular disease. Ultimately, this core outcome set will ensure the shared priorities of patients, care partners and health professionals are addressed by trial outcomes and improve the evidence base for shared treatment decision-making.

Published
2022

62. A Focus Group Study of Self-Management in Patients With Glomerular Disease

Author

Carter, Simon A. Teng, Claris Gutman, Talia Logeman, Charlotte Cattran, Dan Lightstone, Liz Bagga, Arvind and Barbour, Sean J. Barratt, Jonathan Boletis, John Caster, Dawn J. Coppo, Rosanna Fervenza, Fernando C. Floege, Jurgen and Hladunewich, Michelle A. Hogan, Jonathan J. Kitching, A. Richard Lafayette, Richard A. Malvar, Ana Radhakrishnan, Jai and Rovin, Brad H. Scholes-Robertson, Nicole Trimarchi, Hernan and Zhang, Hong Azukaitis, Karolis Cho, Yeoungjee Viecelli, Andrea K. Dunn, Louese Harris, David Johnson, David W. and Kerr, Peter G. Laboi, Paul Ryan, Jessica Shen, I, Jenny and Ruiz, Lorena Wang, Angela Yee-Moon Lee, Achilles Hoi Kan and Shun, Samuel Fung Ka Tong, Matthew Ka-Hang Teixeira-Pinto, Armando Wilkie, Martin Alexander, I, Stephen Craig, Jonathan C. Martin, Adam Tong, Allison

Abstract

Introduction: Patients with glomerular disease experience symptoms that impair their physical and mental health while managing their treatments, diet, appointments and monitoring general and specific indicators of health and their illness. We sought to describe the perspectives of patients and their care partners on self-management in glomerular disease. Methods: We conducted 16 focus groups involving adult patients with glomerular disease (n = 101) and their care partners (n = 34) in Australia, Hong Kong, the United Kingdom, and United States. Transcripts were analyzed thematically. Results: We identified the following 4 themes: empowered in autonomy (gaining confidence through understanding, taking ownership of disease and treatment, learning a positive health approach); over-whelmed by compounding treatment burdens (financially undermined and depleted, demoralized by side effects and harms, frustrated by fragmented and inflexible care, fear of possible drug harms); striving for stability and normalcy (making personal sacrifices, maximizing life participation, attentiveness to bodily signs, avoiding precarious health states, integrating medicines into routines); and necessity of health-sustaining relationships (buoyed by social support, fulfilling meaningful responsibilities, sharing and normalizing experiences, seeking a trusting and respectful alliance). Conclusion: Patients with glomerular disease and their care partners value their capacity for autonomy and disease ownership, stability of their health, and relationships that support self-management. Strategies directed at strengthening these factors may increase self-efficacy and improve the care and outcomes for patients with glomerular disease.

Published
2022

64. A Core Outcome Set for Trials in Glomerular Disease

Author

Carter, Simon A., primary, Lightstone, Liz, additional, Cattran, Dan, additional, Tong, Allison, additional, Bagga, Arvind, additional, Barbour, Sean J., additional, Barratt, Jonathan, additional, Boletis, John, additional, Caster, Dawn J., additional, Coppo, Rosanna, additional, Fervenza, Fernando C., additional, Floege, Jürgen, additional, Hladunewich, Michelle A., additional, Hogan, Jonathan J., additional, Kitching, A. Richard, additional, Lafayette, Richard A., additional, Malvar, Ana, additional, Radhakrishnan, Jai, additional, Rovin, Brad H., additional, Scholes-Robertson, Nicole, additional, Trimarchi, Hernán, additional, Zhang, Hong, additional, Anumudu, Samaya, additional, Cho, Yeoungjee, additional, Gutman, Talia, additional, O’Lone, Emma, additional, Viecelli, Andrea K., additional, Au, Eric, additional, Azukaitis, Karolis, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Dunn, Louese, additional, Howell, Martin, additional, Ju, Angela, additional, Logeman, Charlotte, additional, Nataatmadja, Melissa, additional, Sautenet, Benedicte, additional, Sharma, Ankit, additional, and Craig, Jonathan C., additional

Published
2022
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69. A Focus Group Study of Self-Management in Patients With Glomerular Disease

Author

Carter, Simon A., primary, Teng, Claris, additional, Gutman, Talia, additional, Logeman, Charlotte, additional, Cattran, Dan, additional, Lightstone, Liz, additional, Bagga, Arvind, additional, Barbour, Sean J., additional, Barratt, Jonathan, additional, Boletis, John, additional, Caster, Dawn J., additional, Coppo, Rosanna, additional, Fervenza, Fernando C., additional, Floege, Jürgen, additional, Hladunewich, Michelle A., additional, Hogan, Jonathan J., additional, Kitching, A. Richard, additional, Lafayette, Richard A., additional, Malvar, Ana, additional, Radhakrishnan, Jai, additional, Rovin, Brad H., additional, Scholes-Robertson, Nicole, additional, Trimarchi, Hernán, additional, Zhang, Hong, additional, Azukaitis, Karolis, additional, Cho, Yeoungjee, additional, Viecelli, Andrea K., additional, Dunn, Louese, additional, Harris, David, additional, Johnson, David W., additional, Kerr, Peter G., additional, Laboi, Paul, additional, Ryan, Jessica, additional, Shen, Jenny I., additional, Ruiz, Lorena, additional, Wang, Angela Yee-Moon, additional, Lee, Achilles Hoi Kan, additional, Ka Shun, Samuel Fung, additional, Ka-Hang Tong, Matthew, additional, Teixeira-Pinto, Armando, additional, Wilkie, Martin, additional, Alexander, Stephen I., additional, Craig, Jonathan C., additional, Martin, Adam, additional, and Tong, Allison, additional

Published
2021
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76. NAVKIDS2 trial: a multi-centre, waitlisted randomised controlled trial of a patient navigator intervention in children with chronic kidney disease - statistical analysis plan and update to the protocol.

Author

van Zwieten, Anita, Ryan, Elizabeth G., Caldwell, Patrina, Howard, Kirsten, Tong, Allison, Craig, Jonathan C., Alexander, Stephen I., Howell, Martin, Teixeira-Pinto, Armando, Hawley, Carmel M., Jesudason, Shilpanjali, Walker, Amanda, Mackie, Fiona, Kennedy, Sean E., McTaggart, Steven, McCarthy, Hugh J., Carter, Simon A., Kim, Siah, Woodleigh, Reginald, and Francis, Anna

Abstract

Background: This update summarises key changes made to the protocol since the publication of the original protocol for the NAVKIDS2 trial of patient navigators for children with chronic kidney disease (CKD) experiencing social disadvantage and provides the statistical analysis plan (SAP) which has not previously been published.Methods/design: The original protocol was published in BMC Nephrology ( https://doi.org/10.1186/s12882-019-1325-y ) prior to the commencement of trial recruitment. During the course of the trial, some key methodological changes needed to be made including changes to eligibility criteria (addition of patients with CKD stages 1-2, broadening of financial status eligibility criterion, addition of patients living in rural/remote areas, modification of age eligibility to 0-16 years, addition of limits related to the language spoken by family, guidance regarding families with multiple eligible children), changes to sites, reduction of sample size, addition of virtual options for consent and study procedures in response to the COVID-19 pandemic, removal of staggered recruitment across sites, addition of outcomes, and changes to the timing and number of assessments. This update summarises the changes made and their rationale and provides the detailed plan for statistical analysis of the trial. These changes have been finalised prior to the completion of study follow-up and the commencement of data analysis.Trial Registration: Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12618001152213 . Prospectively registered on 12 July 2018. [ABSTRACT FROM AUTHOR]

Published
2022
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81. Patient and caregiver perspectives on blood pressure in children with chronic kidney disease

Author

Wu, Justin Guang-Ao, primary, Tong, Allison, additional, Evangelidis, Nicole, additional, Manera, Karine E, additional, Hanson, Camilla S, additional, Baumgart, Amanda, additional, Amir, Noa, additional, Sinha, Aditi, additional, Dart, Allison, additional, Eddy, Allison A, additional, Guha, Chandana, additional, Gipson, Debbie S, additional, Bockenhauer, Detlef, additional, Yap, Hui-Kim, additional, Groothoff, Jaap, additional, Zappitelli, Michael, additional, Alexander, Stephen I, additional, Furth, Susan L, additional, Samuel, Susan, additional, Carter, Simon A, additional, Walker, Amanda, additional, Kausman, Joshua, additional, Martinez-Martin, David, additional, Gutman, Talia, additional, and Craig, Jonathan C, additional

Published
2021
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82. Establishing core outcome domains in pediatric kidney disease: report of the Standardized Outcomes in Nephrology—Children and Adolescents (SONG-KIDS) consensus workshops

Author

Hanson, Camilla S., primary, Craig, Jonathan C., additional, Logeman, Charlotte, additional, Sinha, Aditi, additional, Dart, Allison, additional, Eddy, Allison A., additional, Guha, Chandana, additional, Gipson, Debbie S., additional, Bockenhauer, Detlef, additional, Yap, Hui-Kim, additional, Groothoff, Jaap, additional, Zappitelli, Michael, additional, Webb, Nicholas J.A., additional, Alexander, Stephen I., additional, Furth, Susan L., additional, Samuel, Susan, additional, Neu, Alicia, additional, Viecelli, Andrea K., additional, Ju, Angela, additional, Sharma, Ankit, additional, Au, Eric H., additional, Desmond, Hailey, additional, Shen, Jenny I., additional, Manera, Karine E., additional, Azukaitis, Karolis, additional, Dunn, Louese, additional, Carter, Simon A., additional, Gutman, Talia, additional, Cho, Yeoungjee, additional, Walker, Amanda, additional, Francis, Anna, additional, Sanchez-Kazi, Cheryl, additional, Kausman, Joshua, additional, Pearl, Meghan, additional, Benador, Nadine, additional, Sahney, Shobha, additional, Tong, Allison, additional, Guha, Abhjit, additional, Solarin, Adaobi, additional, Platona, Adriana, additional, Hamilton, Alexander, additional, Woods-Barnard, Alice, additional, Eddy, Allison, additional, Karathanas, Alyssa, additional, Baumgart, Amanda, additional, Fielding, Amelia, additional, LePage, Amelia, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Teixeira, Ana, additional, Viecelli, Andrea, additional, Matus, Andrea, additional, Narva, Andrew, additional, Wang, Angela Yee-Moon, additional, Fielding, Anna, additional, Meza, Anthony, additional, Fielding, Aria, additional, Teixeira-Pinto, Armando, additional, Bagga, Arvind, additional, Jankauskienė, Augustina, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Sautenet, Benedicte, additional, Vogt, Beth, additional, Foster, Bethany, additional, Warady, Bradley, additional, Dixon, Bradley, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Bscardark, Brittney, additional, Romeo, Brooklyn, additional, Hanson, Camilla, additional, Meza, Carlos, additional, Brockett, Carter, additional, Prestidge, Chanel, additional, Green, Charmaine, additional, Perkins, Christy, additional, Schmitt, Claus Peter, additional, Fielding, Craig, additional, Settee, Craig, additional, Sumpton, Daniel, additional, Meza, Daniel, additional, Karathanas, Darien, additional, Harris, David, additional, Wheeler, David, additional, Hooper, David, additional, Gipson, Debbie, additional, Geary, Denis, additional, Haffner, Dieter, additional, Mekahli, Djalila, additional, Drozdz, Dorota, additional, Romeo, Ed, additional, Ku, Elaine, additional, Urbina, Elaine, additional, Levtchenko, Elena, additional, Balovlenkov, Elena, additional, Hodson, Elisabeth, additional, Morales, Emily, additional, O'Lone, Emma, additional, Machuca, Emma, additional, Carlton, Emmah, additional, Au, Eric, additional, Olver, Erin, additional, Morales, Estefania, additional, Mirza, Fatima, additional, Mackie, Fiona, additional, Tentori, Francesca, additional, Schaefer, Franz, additional, Higgins, Gail, additional, Deschenes, Georges, additional, Plunkett, Georgia, additional, Yoder, Gerilyn, additional, Wong, Germaine, additional, Morales, Giselle, additional, Germino, Greg, additional, Perkins, Hayley, additional, Mitchell-Smith, Harrison, additional, Coolican, Helen, additional, Xu, Hong, additional, Anochie, Ifeoma, additional, Ha, Il-Soo, additional, Davis, Ira, additional, Liu, Isaac, additional, Samaniego, Israel, additional, Machuca, Jaime, additional, Machuca, James, additional, Kerklaan, Jasmijn, additional, Brockett, Jeff, additional, Norton, Jenna, additional, Shen, Jenny, additional, Goebel, Jens, additional, Rao, Jia, additional, Machuca, Jimmy, additional, Mitchell-Smith, Jo, additional, Watson, Jo, additional, Gill, John, additional, Craig, Jonathan, additional, Flynn, Joseph T., additional, Samuels, Joshua, additional, Bacchetta, Justine, additional, Yoder, Kaleb, additional, Manera, Karine, additional, Twombley, Katherine, additional, McMichael, Kelly-Ann, additional, Ishikura, Kenji, additional, Romeo, Kennedy, additional, Settee, Kevin, additional, Van, Kim Linh, additional, McMichael, Lachlan, additional, Trinh, Lany, additional, Greenbaum, Larry, additional, Sanchez, Laura, additional, Fielding, Leo, additional, Rees, Lesley, additional, Lippincott, Leslie, additional, Mejia-Saldivar, Levi, additional, Saldivar, Lidia, additional, Guay-Woodford, Lisa, additional, Samaniego, Lizett, additional, Hamiwka, Lorraine, additional, Bell, Lorraine, additional, Barry, Lucinda, additional, Macauley, Luke, additional, Holmes, Luke, additional, Karathanas, Madelynn, additional, Mitchell-Smith, Madison, additional, Walker, Mandy, additional, Benavides, Manuel, additional, Tonelli, Marcello, additional, Ferris, Maria, additional, Vivarelli, Marina, additional, Wolfenden, Mark, additional, Howell, Martin, additional, Christian, Martin, additional, Schreiber, Martin, additional, Moxey-Mims, Marva, additional, Leonard, Mary, additional, Karathanas, Matthew, additional, Natatmadja, Melissa, additional, Brockett, Melissa, additional, Bonilla-Felix, Melvin, additional, Atkinson, Meredith, additional, Baum, Michel, additional, Rheault, Michelle, additional, McCulloch, Mignon, additional, Matsuda-Abedini, Mina, additional, Michael, Mini, additional, Khan, Mohammad, additional, Salih, Mohammad, additional, Carlton, Mycah Ann, additional, Plunkett, Ngairre, additional, Webb, Nick, additional, Scholes-Robertson, Nicki, additional, Larkins, Nicolas, additional, Evangelidis, Nicole, additional, Yoder, Nigel, additional, Meza, Norma, additional, Olver, Paige, additional, Carlton, Paiyton, additional, Brophy, Patrick, additional, Tugwell, Peter, additional, Cochat, Pierre, additional, Mehrotra, Rajnish, additional, Wolfenden, Raphael, additional, Gbadegesin, Rasheed, additional, Benavides, Raymond, additional, Johnson, Rebecca, additional, Morales, Ricardo, additional, McGee, Richard, additional, Fish, Richard, additional, Gardos, Robert, additional, Pecoits-Filho, Roberto, additional, Vargas, Rocio, additional, Saldivar, Rodolfo, additional, Coppo, Rosanna, additional, Shroff, Rukshana, additional, Raina, Rupesh, additional, Youssouf, Sajeda, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Baldacchino, Sarah, additional, Wenderfer, Scott, additional, Wolfenden, Sebastian, additional, Carlton, Selah, additional, Sutton, Shanna, additional, Murphy, Shannon, additional, Teo, Sharon, additional, Salih, Sheyma, additional, Carlton, Silas, additional, Carter, Simon, additional, Pearson, Simone, additional, Khan, Simra, additional, Wilson, Skyla, additional, Sharma, Sonia, additional, Alexander, Stephen, additional, Marks, Stephen, additional, Cornish, Stephen, additional, Goldstein, Stuart, additional, Furth, Susan, additional, Mendley, Susan, additional, Lippincott, Susan, additional, Charles, Symone, additional, Mitchell-Smith, Terri, additional, Harris, Tess, additional, Vetter, Thorsten, additional, Carlton, Tiffany, additional, Carlton, Timothy, additional, Querfeld, Uwe, additional, Saglimbene, Valeria, additional, Charles, Virginia, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Machuca, Yenissey, additional, Salih, Yusuf, additional, Anh, Yo Han, additional, Perkins, Zachary, additional, and Salih, Zeynab, additional

Published
2020
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84. Development of an international Delphi survey to establish core outcome domains for trials in adults with glomerular disease

Author

Carter, Simon A. Logeman, Charlotte Howell, Martin Cattran, Dan Lightstone, Liz Bagga, Arvind Barbour, Sean J. and Barratt, Jonathan Boletis, John Caster, Dawn J. Coppo, Rosanna Fervenza, Fernando C. Floege, Jurgen Hladunewich, Michelle A. Hogan, Jonathan J. Kitching, A. Richard and Lafayette, Richard A. Malvar, Ana Radhakrishnan, Jai Rovin, Brad H. Scholes-Robertson, Nicole Trimarchi, Hernan Zhang, Hong Cho, Yeoungjee Dunn, Louese Gipson, Debbie S. Liew, Adrian Sautenet, Benedicte Viecelli, Andrea K. Harris, David and Johnson, David W. Wang, Angela Yee-Moon Teixeira-Pinto, Armando Alexander, Stephen I. Martin, Adam Tong, Allison and Craig, Jonathan C.

Subjects
education
Abstract

Outcomes relevant to treatment decision-making are inconsistently reported in trials involving glomerular disease. Here, we sought to establish a consensus-derived set of critically important outcomes designed to be reported in all future trials by using an online, international two-round Delphi survey in English. To develop this, patients with glomerular disease, caregivers and health professionals aged 18 years and older rated the importance of outcomes using a Likert scale and a Best-Worst scale. The absolute and relative importance was assessed and comments were analyzed thematically. Of 1198 participants who completed Round 1, 734 were patients/ caregivers while 464 were health care professionals from 59 countries. Of 700 participants that completed Round 2, 412 were patients/caregivers and 288 were health care professionals. Need for dialysis or transplant, kidney function, death, cardiovascular disease, remission-relapse and life participation were the most important outcomes to patients/caregivers and health professionals. Patients/ caregivers rated patient-reported outcomes higher while health care professionals rated hospitalization, death and remission/relapse higher. Four themes explained the reasons for their priorities: confronting death and compounded suffering, focusing on specific targets in glomerular disease, preserving meaning in life, and fostering self-management. Thus, consistent reporting of these critically important outcomes in all trials involving glomerular disease is hoped to improve patient-centered decision-making.

Published
2021

85. Understanding Digital Societies Ed. 1

Author

Perriam, Jessamy, Carter, Simon, Perriam, Jessamy, Perriam, Jessamy, Carter, Simon, and Perriam, Jessamy

Abstract

Understanding Digital Societies provides a framework for understanding our changing, technologically shaped society and how sociology can help us make sense of it. You will be introduced to core sociological ideas and texts along with exciting global examples that shed light on how we can use sociology to understand the world around us. This innovative, new textbook: Provides unique insights into using theory to help explain the prevalence of digital objects in everyday interactions. Explores crucial relationships between humans, machines and emerging AI technologies. Discusses thought-provoking contemporary issues such as the uses and abuses of technologies in local and global communities. Understanding Digital Societies is a must-read for students of digital sociology, sociology of media, digital media and society, and other related fields.

Published
2021

87. We must bring our whole selves

Author

Carter, Simon

Subjects
Business, Business, international, Real estate industry
Abstract

As much of the country returns to the workplace, the conversation has been dominated by how and where people work. Have we lost focus on D&I? Have we as an [...]

Published
2021

91. Patient and caregiver perspectives on blood pressure in children with chronic kidney disease.

Author

Wu, Justin Guang-Ao, Tong, Allison, Evangelidis, Nicole, Manera, Karine E, Hanson, Camilla S, Baumgart, Amanda, Amir, Noa, Sinha, Aditi, Dart, Allison, Eddy, Allison A, Guha, Chandana, Gipson, Debbie S, Bockenhauer, Detlef, Yap, Hui-Kim, Groothoff, Jaap, Zappitelli, Michael, Alexander, Stephen I, Furth, Susan L, Samuel, Susan, and Carter, Simon A

Subjects
BLOOD pressure, PEDIATRIC nephrology, CHRONIC kidney failure, PATIENTS' attitudes, PATIENT-centered care, CARDIOVASCULAR diseases, KIDNEY failure
Abstract

Background More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. Methods Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology—Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8–21 years) and caregivers (of children ages 0–21 years) pertaining to blood pressure. Results Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). Conclusions For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD. [ABSTRACT FROM AUTHOR]

Published
2022
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95. Core Outcome Measures for Trials in People With Coronavirus Disease 2019: Respiratory Failure, Multiorgan Failure, Shortness of Breath, and Recovery

Author

Tong, Allison, Baumgart, Amanda, Evangelidis, Nicole, Viecelli, Andrea K, Carter, Simon A, Azevedo, Luciano Cesar, Cooper, Tess, Bersten, Andrew, Cervantes, Lilia, Chew, Derek P, Crowe, Sally, Douglas, Ivor S, Flemyng, Ella, Elliott, Julian H, Hannan, Elyssa, Horby, Peter, Howell, Martin, Ju, Angela, Lee, Jaehee, Lorca, Eduardo, Lynch, Deena, Manera, Karine E, Marshall, John C, Gonzalez, Andrea Matus, McKenzie, Anne, Mehta, Sangeeta, Mer, Mervyn, Morris, Andrew Conway, Needham, Dale M, Nseir, Saad, Povoa, Pedro, Reid, Mark, Sakr, Yasser, Shen, Ning, Smyth, Alan R, Simpson, A John, Snelling, Tom, Strippoli, Giovanni FM, Teixeira-Pinto, Armando, Torres, Antoni, Turner, Tari, Webb, Steve, Williamson, Paula R, Woc-Colburn, Laila, Zhang, Junhua, Craig, Jonathan C, COVID-19-Core Outcomes Set Investigators, Teixeira-Pinto, Armando [0000-0002-9389-2516], and Apollo - University of Cambridge Repository

Subjects
Clinical Trials as Topic, Dyspnea, Research Design, Multiple Organ Failure, Outcome Assessment, Health Care, Practice Guidelines as Topic, COVID-19, Humans, Reproducibility of Results, Recovery of Function, Respiratory Insufficiency
Abstract

OBJECTIVES: Respiratory failure, multiple organ failure, shortness of breath, recovery, and mortality have been identified as critically important core outcomes by more than 9300 patients, health professionals, and the public from 111 countries in the global coronavirus disease 2019 core outcome set initiative. The aim of this project was to establish the core outcome measures for these domains for trials in coronavirus disease 2019. DESIGN: Three online consensus workshops were convened to establish outcome measures for the four core domains of respiratory failure, multiple organ failure, shortness of breath, and recovery. SETTING: International. PATIENTS: About 130 participants (patients, public, and health professionals) from 17 countries attended the three workshops. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Respiratory failure, assessed by the need for respiratory support based on the World Health Organization Clinical Progression Scale, was considered pragmatic, objective, and with broad applicability to various clinical scenarios. The Sequential Organ Failure Assessment was recommended for multiple organ failure, because it was routinely used in trials and clinical care, well validated, and feasible. The Modified Medical Research Council measure for shortness of breath, with minor adaptations (recall period of 24 hr to capture daily fluctuations and inclusion of activities to ensure relevance and to capture the extreme severity of shortness of breath in people with coronavirus disease 2019), was regarded as fit for purpose for this indication. The recovery measure was developed de novo and defined as the absence of symptoms, resumption of usual daily activities, and return to the previous state of health prior to the illness, using a 5-point Likert scale, and was endorsed. CONCLUSIONS: The coronavirus disease 2019 core outcome set recommended core outcome measures have content validity and are considered the most feasible and acceptable among existing measures. Implementation of the core outcome measures in trials in coronavirus disease 2019 will ensure consistency and relevance of the evidence to inform decision-making and care of patients with coronavirus disease 2019.

Published
2020
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96. Establishing a Core Outcome Set for Autosomal Dominant Polycystic Kidney Disease: Report of the Standardized Outcomes in Nephrology–Polycystic Kidney Disease (SONG-PKD) Consensus Workshop

Author

Cho, Yeoungjee, primary, Tong, Allison, additional, Craig, Jonathan C., additional, Mustafa, Reem A., additional, Chapman, Arlene, additional, Perrone, Ronald D., additional, Ahn, Curie, additional, Fowler, Kevin, additional, Torres, Vicente, additional, Gansevoort, Ron T., additional, Ong, Albert C.M., additional, Coolican, Helen, additional, Tze-Wah Kao, Juliana, additional, Harris, Tess, additional, Gutman, Talia, additional, Shen, Jenny I., additional, Viecelli, Andrea K., additional, Johnson, David W., additional, Au, Eric, additional, El-Damanawi, Ragada, additional, Logeman, Charlotte, additional, Ju, Angela, additional, Manera, Karine E., additional, Chonchol, Michel, additional, Odland, Dwight, additional, Baron, David, additional, Pei, York, additional, Sautenet, Benedicte, additional, Rastogi, Anjay, additional, Sharma, Ankit, additional, Rangan, Gopala, additional, Levin, Adeera, additional, Yu, Alan, additional, Ong, Albert, additional, Thompson, Aliza, additional, Baumgart, Amanda, additional, Bernier-Jean, Amelie, additional, Kelly, Amy, additional, Viecelli, Andrea, additional, Mallett, Andrew, additional, Wang, Angela, additional, Rastog, Anjay, additional, Nadeau-Fredette, Annie-Claire, additional, Teixeira-Pinto, Armando, additional, Kelly, Ayano, additional, Gillespie, Barbara, additional, Canaud, Bernard, additional, Manns, Braden, additional, Hemmelgarn, Brenda, additional, Hanson, Camilla, additional, Hawley, Carmel, additional, Pollock, Carol, additional, Chao, Chia-Ter, additional, Rutherford, Claudia, additional, Sumpton, Daniel, additional, Harris, David, additional, Johnson, David, additional, Wheeler, David, additional, Mekahli, Djalila, additional, O’Donoghue, Donal, additional, Peters, Dorien, additional, Oberdhan, Dorothee, additional, Balovlenkov, Elena, additional, O'Lone, Emma, additional, Tentori, Francesca, additional, Czerwiec, Frank, additional, Oskoui, Frederic Rahbari, additional, Rangan, Gopi, additional, Germino, Gregory, additional, Park, Hayne, additional, Htay, Htay, additional, Ryu, Hyunjin, additional, Norton, Jenna, additional, Shen, Jenny, additional, Gill, John, additional, Kao, Juliana, additional, Eckardt, Kai-Uwe, additional, Manera, Karine, additional, Van, Kim Linh, additional, Guay-Woodford, Lisa, additional, Krishnan, Mahesh, additional, Hogan, Marie, additional, Howell, Martin, additional, Park, Meyeon, additional, Mrug, Michal, additional, Ta, Michelle, additional, Evangelidis, Nicole, additional, Harris, Peter, additional, Tugwell, Peter, additional, Garimella, Pranav, additional, Krishnasamy, Rathika, additional, Mustafa, Reem, additional, McGee, Richard, additional, Pecoits-Filho, Roberto, additional, Gansevoort, Ron, additional, Perrone, Ronald, additional, Torra, Roser, additional, Crowe, Sally, additional, Anumudu, Samaya, additional, Chan, Samuel, additional, Bernays, Sarah, additional, Horie, Shigeo, additional, Carter, Simon, additional, Palmer, Suetonia, additional, Mendley, Susan, additional, Watnick, Terry, additional, Hiemstra, Thomas, additional, Weimbs, Thomas, additional, Jha, Vivek, additional, van Biesen, Wim, additional, Winkelmayer, Wolfgang, additional, Cho, Yeoungjee, additional, Oh, Yun Kyu, additional, Clark, David, additional, McGinty-Poteet, Debra, additional, King, Elizabeth, additional, Vickers, Frances, additional, Odland, Jean, additional, Lee, Lynore, additional, Vickers, Marvin, additional, Johnston-Clark, Mary, additional, Dorsey, Robin, additional, and Baron, Zachary, additional

Published
2021
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